Kian’s Story

kian 2

Kian lived in the United Kingdom and had 5 battles with ANE. Kian’s mutation in Ranbp2 was de novo (not inherited). He was not diagnosed with ANE until his 4th attack, showing how under recognised & misdiagnosed Acute Necrotizing Encephalopathy really is. Read how very, very brave he was and how ANE has affected his family.

http://aneinternational.org/ane/stories/kian/

#RareDisease #ANEawarenessday #Influenza #cytokinestorm #braininjury #AcuteNecrotizingEncephalopathy #ShareYourRare #patientstories #ANEC  #FacesOfANE #ANEandMe #FairForRare #NotJustTheFlu  #ParentsToAnAngel

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